From Access Press (Minnesota’s Disability Community Center)

May 10. 2009

Living with muscular atrophy in Peru

Interview Dr. Liliana Mayo of Peru

by Kelly Lee, Advocating Change Together

My name is Dr. Liliana Mayo, Director of the Centro Ann Sullivan del Peru (CASP), and I would like to tell you about Julio, a person with spinal muscular atrophy who has been working as part of my team since 1987 and is 60 years old.

When I met Julio, he lived in extreme poverty with his eldery mother in a 16-square-meter house made from adobe that it had not running water or toilet, and not much to eat.

In a time quite different from the present time, when his condition was diagnosed, he only was told, “Julio, I am sorry but your disease had no cure.” Even some physicians who had examined him predicted that he would not live very long. Julio understood how hard his life would be if he fought this battle on his own. That is, without means and without support from the government. So he taught himself the English language to communicate with other people like him and institutions around the world conducting research about SMA, and he learned through specialized magazines that people with severe disabilities were joining the work force in developed countries with the help of computers, and that adaptive technology was making their lives easier. For a heart that knows no bounds, he had to make connections and get additional information so he could gain access to available technology in Peru.

Julio has learned from the persistence that faith moves mountains, so he found people who helped him to get the basic things he needed to work and make a difference in his life. In time, God answered his prayers, and he could get a second- hand battery-powered wheelchair, a computer with wireless keyboard, and an Internet connection to do additional work at home to pay for his

part-time caregiver, and to help other disabled people less fortunate than him.

Julio talks about how important it is for people with disabilities to have a job and to feel needed by other people.

Julio works as our translator and is in charge of translating materials for professionals and families of people with different abilities, as well as of entering data about grades and attendance of parents at training meetings. Julio is my friend! He has turned 60 years old and is the only man with SMA in Peru who has reached this age working full time.

Julio shows us what a person with a severe disability in Peru can do while working and helping other people to fight for their rights, persist and knock on doors to get what he needs in this stage of his disease and never, never take no for an answer.